How running changed a young woman’s too-short life

Amy Frohnmayer, practitioner of Western psychology and Eastern contemplative disciplines, seeker, sufferer, healer, daughter, sister, friend and ardent celebrant of the daily sacrament of distance running, met Alex Winn in a manner emblematic of her deeply lived, determinedly happy, tragically abbreviated life.

On November 1, 2013, 26-year-old Amy stopped at her favourite Thai restaurant in Bend, Oregon, US. There was an air of novelty to the early darkness, an edge of heightened awareness, that Amy might have found stimulating. She made a point of paying attention to small details and ordinary moments that others took for granted. While at university, she wrote a letter to her father describing a cloud formation. She noted the other students had just hurried to class, oblivious to the glorious show taking place above them. Amy alone had stopped to look.

Amy ordered takeaway and a glass of wine to drink while she waited. She was not supposed to drink alcohol, but permitted herself the occasional modest indulgence. She settled onto a bar stool, opened a book and sipped her wine. The only other customer at the bar was a man around Amy’s age. Their eyes met, she gave a warm smile and said hello.

‘That was all it took,’ Alex Winn, then 32, recalls. ‘There was this immediate, deep connection. We started to talk. After a few minutes I moved next to her. We talked for hours.’

They never stopped talking. Alex was a keen mountain biker who had been drawn to the city in Oregon by its bountiful outdoors. He climbed, kayaked and skied. He ran, too, but mostly to stay fit for other sports. Amy was a runner
 who also skied, hiked and paddled. She ran 30-40 miles a week, did half marathons and had finished a marathon. She had converted friends 
into runners and if she didn’t run on a given day, 
she didn’t feel like herself. Although a natural athlete, Amy downplayed competition. She took Alex out on her favourite trail along the river and when he fell behind she slowed down so they could run together. Soon they were doing everything together. When it was clear something serious was building, Amy called for a meeting.

‘In a calm, matter-of-fact way, she told me about her family,’ says Alex. ‘She explained that one of her older sisters had died at the age of 12, and the other at 24. She told me she had the same disease. She said I should google Fanconi anaemia. The subtext was that if I knew what I was getting into, I might want to get out now.’

Hidden killer

Fanconi anaemia (FA) is a very rare inherited anaemia, occurring in around one in every 350,000 births. It is characterised by leukaemia, solid-tumour malignancies and fatal bone-marrow failure. As a recessive-gene disorder, FA is especially insidious. When two carriers of the gene mate, they are almost always unaware they have it. They don’t suffer themselves, because each carries only half of FA’s genetic code, but there is a one in four chance of the couple’s offspring developing FA.

Most FA patients develop low blood counts by the time they are 10, putting them at high risk of developing acute myeloid leukaemia (AML). By early adulthood the risk of developing cancer is extremely high. The median lifespan for FA patients is 33 years. There is no cure. Due to an inability to repair DNA, FA patients can’t tolerate chemotherapy, so treatments that work for other cancers are not options. Bone-marrow transplants can prolong life, but carry great risks.

‘FA is a DNA-repair disease,’ explains Lynn Frohnmayer, Amy’s mother. ‘Tons of little mistakes occur constantly in our bodies. But healthy bodies, these miracle machines, are constantly and continually correcting them, eliminating the flawed cells or making them whole. But with DNA disrepair, this process breaks down. Healthy cells die and bad cells replicate and that leads to leukaemia.’ Indeed, as FA advances, bone marrow loses the capacity to produce any type of blood cell: oxygen-bearing red cells, protective white cells or clot-producing platelets.

‘For a parent, having a child with FA is excruciating,’ says Dr Grover Bagby, founding director of the Knight Cancer Institute (KCI) at Oregon Health & Science University (OHSU) in Portland, US, who helped treat two Frohnmayer sisters. ‘It’s not a question of if the disease is going to manifest, but when.’

That dreadful day inevitably arises by early adulthood. So FA also presents a brutal emotional challenge. The parents of an FA child know she is living on borrowed time and, sooner or later, the child knows it, too.

On the beach one summer day in the early 1980s, Lynn Frohnmayer looked at her three young children playing on the Pacific Ocean’s edge and thought she was the luckiest woman in the world. She had married her husband, Dave, in 1970, and between 1973 and 1978, they had three children: Kirsten, Mark and Katie. She loved reading to her kids, loved helping them develop into healthy, bright children. ‘I remember watching them play and thinking how blessed I was,’ says Lynn.

It’s now a cold, grey afternoon in 2017 and Lynn is sitting at her dining room table. Beyond the windows, a brief stab of sunshine turns the fairways of the Eugene Country Club an almost aching shade of green. Giving a smile at once rueful, determined and gently self-mocking, Lynn, now 74, says, ‘I thought I had the perfect life.’

Not long after that perfect beach day, on July 5, 1983, 10-year-old Kirsten collapsed with a high fever. This was clearly more than a normal childhood illness, so Lynn rushed her daughter to the pediatrician. ‘Kirsten’s blood counts were extremely low,’ says Lynn. ‘The doctor suspected leukaemia.’

The lab results came back: no leukaemia. Lynn wept with relief. ‘But the doctor says, “Hold on. Kirsten’s bone marrow is barely producing any kind of blood cell at all”,’ Lynn remembers. “This could be something worse than leukaemia.”’ Worse than leukaemia? Further tests revealed Kirsten had Fanconi anaemia. She was unlikely to live to adulthood.

The doctor advised against testing the two healthy, symptom-free younger children. But Lynn was adamant. The tests confirmed that five-year-old Katie also had FA. Both Frohnmayer girls were, in effect, doomed. The perfect life had spiralled into a nightmare.

Amy Frohnmayer never endured a formal meeting at which her parents announced her condition. FA was just always part of her life. She and Kirsten and Katie, her two older sisters, had the disease. Her older brothers – Mark, born in 1974, and Jonathan, born in 1985 – did not (although FA afflicts boys and girls equally). Just the luck of the draw.

Living in the moment

In 1985, a few years after Kirsten’s and Katie’s diagnoses, Lynn and Dave started an FA family support group. Then, in 1989, they founded the Fanconi Anaemia Research Fund (FARF) to discover more about the disease, and share information and support with other FA families around the world. Dave served as fundraiser and strategist, while Lynn worked at home, taking care of the kids and running the support group and research fund. She helped plan scientific symposia and family meetings, evaluated grant proposals and wrote articles for the newsletters distributed to the international FA community, which she had largely organised. ‘Lynn knows more about FA, its biology, stages, mechanics and workings, than all but four or five of the clinicians and researchers on our staff,’ says Bagby.

In 1988, Lynn and Dave travelled to Nova Scotia, Canada, searching for a distant relative who might possess the genotype to be a bone-marrow donor for the girls. Prior to that unsuccessful mission, Lynn and Dave had hoped that a fifth child would provide the miracle match for one of their daughters. In 1986, when Lynn became pregnant with Amy, in utero tests indicated that the foetus was not only FA-free but also possessed the exact genetic donor match for Katie. ‘I thought I had won the lottery,’ says Lynn.

This didn’t mean there was a cure for Katie, but there was hope, a chance to gain many more years of life – years during which the research could continue, perhaps ultimately producing a cure. And all that, of course, was only a bonus; another baby, FA-free, would be the main gift.

Amy Elizabeth Frohnmayer was born on February 25, 1987. Weeks passed. The phone rang at the Frohnmayer house. It was the pediatrician. ‘There’s a problem,’ he said. They needed a new sample of Amy’s blood – the cord-blood cells they had tested were clotted. Lynn’s heart dropped. ‘I already knew the real reason they wanted a retest,’ she recalls. Her intuition was correct. Amy had FA after all. Lynn and Dave staggered but kept going. ‘One step, then another,’ says Lynn.

Now there were three girls in one family living with a death sentence. Three girls having their blood counts continually monitored and their bone marrow regularly biopsied. But there were also three girls – and two boys – who were doing well at school, taking piano lessons, playing tennis and having sleepovers with friends. ‘I remember a profoundly happy and loving childhood,’ says Jonathan, 32. ‘My parents did an amazing job keeping us level.’

But FA shadowed every moment. ‘The disease was just part of our life for our family,’ says Lynn. ‘So Amy always accepted it. She always feared the possibility she had limited time. We always emphasised that we were working on it, making progress and truly hoped that we’d be able to greatly extend her life. New ideas were coming around, like improved bone-marrow transplants and gene therapy. There was no false hope for a cure, but there was hope. Amy knew the reality and accepted it. She watched her sisters get sick and die.’

Katie was first, in 1991, when she was just 12. She died from a rare complication of FA called Moyamoya disease, which led to a series of strokes. Amy was only four, but was very close to Katie, and deeply grieved her loss.

Lynn and Dave couldn’t give in to their grief. They had two surviving daughters and the race was still on. Every day counted, every consultation, every meeting of FA families to share information, every research paper, every blood test: something might yet save the two girls or, if not save them, buy them more time. And every day counted – every shared dinner, every bike ride, every moment just playing cards or hiking together.

As she grew older, Amy paid attention to her parents’ sense of urgency and their resilience. If her mother and father could squarely face the affliction visited on their family then so could she. The challenge, she realised, was to be present in the moment; to accept the good or ill, grace or pain, that each moment delivered. Unlike most people, Amy couldn’t deny that her supply of moments was limited.

‘In Amy’s situation she might have mourned her fate and become extremely depressed, but she took the opposite tack,’ says Lynn. ‘She felt deeply grateful for what she did have. She couldn’t waste a minute. Max out on life!’ But how, exactly, do you go about that? Amy knew that she possessed a brief, dwindling amount of time on earth. She decided to spend a significant chunk of it running.

Sole searching

Neither her mother nor her brothers precisely recall when Amy started to run, but her devotion to running, like every other aspect of her life, grew out of her disease and was nourished by a deep, complex root system.

In 1997, aged 24, Kirsten Frohnmayer died from complications of FA. Due to a bone-marrow transplant, Kirsten had lived for 14 years after her diagnosis. That provided a modicum of solace for Lynn and Dave, but their battle against the disease – their race against time – wasn’t over. Amy was still here, simultaneously growing up and dealing with her mortality.

A few years later, the family went on a scuba diving holiday. ‘We both got it,’ Lynn remembers. ‘Amy was only 12, but was a wonderful diver – graceful and receptive to the beauty of this world she was moving through.’
For all its appeal, however, diving could only be an occasional adventure. What was the closest everyday equivalent to scuba diving? How could she move through the world under her own power, paying attention inwardly and outwardly, at once free and connected? ‘I connect Amy’s love for running to her experience with scuba diving,’ says Lynn. ‘They were both physical outlets that brought her close to nature and fed her spirit.’

Mark, 42, also recognised his baby sister’s artistic sensibility and spiritual aura. ‘Amy was the family poet,’ he says. ‘It was as if the accrued energy from our long ordeal with FA – all the hope, all the love, all the anguish – came together and crystallised in Amy.’

Several years later, in a letter to FARF donors, Amy spelled out her credo: ‘Through the years, I’ve been intermittently paralysed by uncertainty surrounding my future and by the devastating losses of two sisters and countless friends who share this diagnosis. Life has been a series of powerful lessons in letting go – in accepting over and over the setbacks inherent in life with FA and transcending fear long enough to set goals that give life meaning: to learn how to live inside of moments, to nurture relationships with loved ones and to contribute in little ways to this world throughout whatever time I have.”

Trail blazing

At school, Amy played for various sports teams, did well academically and was involved in student government. She also volunteered with Courageous Kids, a support group for children dealing with grief. At her high school graduation in June 2005, despite her FA prognosis – or perhaps, in part, because of it – Amy’s classmates voted her the student most likely to succeed. In September, she became an undergraduate at Stanford University. During her first week she met fellow first-year student Chenxing Han and the two became close friends.

‘From the moment I met Amy, I recognised this aura around her – a glow,’ says Chenxing. ‘Amy could simultaneously seem as carefree as a child and as wise as a 70-year-old grandmother. She was compassionate but clear-eyed and grounded, with a mischievous streak and self-deprecating sense of humour.’

While at Stanford, Amy solidified her commitment to running. ‘I became a runner because of Amy,’ says Chenxing. ‘Although I couldn’t keep up with her, she always encouraged me. She was such a strong runner – a superwoman in so many ways.’

Amy also deepened an exploration into Buddhist-based meditation and contemplative practices that began during her teen years. She discovered that running enriched her ongoing quest to be present in the moment. ‘Running was a spiritual practice for her,’ says Chenxing, ‘but everything Amy did was infused with spirituality. She treated her morning routine as a sacred ritual: one blueberry mufiin savoured before her four-or-more-mile run.’

When Amy decided to take on the challenge of a marathon her parents and doctors were sceptical. Why stress her already compromised system, further challenge her bone marrow’s capacity to produce red blood cells? Why not run a 10K or half marathon?

‘Amy wanted the full 26.2 experience,’ says Lynn. ‘She thought, if everyone else had the option of running a marathon, why couldn’t she? Plus, a few years from now, it would be even more dangerous to stress her system.’

Under close medical supervision, she began training for the 2006 Nike Women’s Marathon in San Francisco. ‘Her mother worried that it would harm her blood counts and deplete her marrow,’ says Bagby. ‘There was no evidence for that, but we really didn’t know. This had never even been contemplated before – an FA patient running a marathon. Her doctors had differing opinions about it, but in the end it came down to her decision.’

When her haemoglobin count dropped during training, Amy persuaded her doctor to prescribe erythropoietin, the red-blood-cell-enhancing hormone illicitly used by doping athletes. She thus blazed two trails: running a marathon with FA while legally on EPO. ‘By God, she was going to do that marathon!’ Lynn recalls. And on October 22, 2006, aged 19, wearing bib number 8516, Amy Frohnmayer did indeed run her marathon, in 5:27:22.

Running for love

In December 2015, when Alex Winn decided to propose, he carefully selected the venue and time: on the beach in Maui, Hawaii, during the couple’s morning run.

The past two years had been the happiest of Alex’s life and he thought the same could be said for Amy. When she had advised him to google Fanconi anaemia, Alex had immediately grasped the severity of Amy’s disease, and the stakes of continuing the relationship. But by that point he was already deeply in love. ‘From that first moment at the restaurant, I knew there was no turning back,’ he says.

For the most part, the ensuing 24 months had been typical of any young couple’s: a blur of work, friends, sport and travel. For Amy and Alex, however, FA brought something deeper. Should he fight and fear the disease, or accept it and learn from it? Amy had long since decided on the latter approach and Alex simply followed her lead.

Amy closely monitored her blood count and every six months she underwent an intrusive bone-marrow biopsy. She served on the FA Research Fund board and spoke about the disease at conferences, including a week-long FA Family Meeting where she worked as a counsellor. ‘Amy was loved and respected,’ says Chenxing. ‘Kids would follow her around, and adults would flock to the meetings when she gave a talk.’

‘FA was Amy’s teacher,’ says Alex. ‘It helped shape her determination to live in the moment and inspired her interest in meditation. Amy’s spirituality was rooted in nature. It was instinctive and intrinsic, but she worked at it.’

Running was a key tool for Amy. ‘There were two central needs that running satisfied for Amy,’ says Alex. ‘The first was physical. Running was a way for her to have some control over her disease. She couldn’t control her genes, but she could choose to live as healthily as possible. The second need was mental and emotional. Running was an avenue of meditation for Amy. A way for her to connect with nature and get into that rhythmic, receptive zone. Amy loved being in the zone.’

After earning a master’s degree in psychology, Amy moved on to Oregon Health & Science University in Portland, where she worked with young-adult cancer patients, enrolling them in clinical-trial treatment programmes. However, she felt drawn more to counselling than academia or research. Also, time was passing; Amy had now outlived both her sisters. How could she make the most of the years she had left?

She moved to Bend, enrolled in a master’s programme in counselling and continued running, covering four miles most days and seven miles twice a week, on her favourite trail along the Deschutes River. Walking the trail some mornings, Lynn occasionally encountered her daughter out on a run. ‘Amy would be flying!’ Lynn recalls. ‘Her hair would be streaming, she’d have this huge smile on her face. I understand that running isn’t always easy, but it never seemed painful for her. It never seemed to be a chore.’

Amy introduced Alex to the Deschutes River Trail. When it snowed, they put on traction cleats and ran on the banked drifts beside the river, flanked by walls of basalt and sheltered by the juniper and ponderosa pine of the high desert.

One day Amy was out
 running solo and met 
another young runner.
 Betsy Flood had moved to 
Bend to run professionally,
 and she responded to Amy’s
 warmth. After that they
 often ran the trail together. ‘Amy was a good runner,’ says Betsy. ‘It wasn’t like I had to slow down a lot to talk to her.’

Betsy would talk about her disappointments and frustrations: health problems had detoured her professional hopes. ‘My troubles seemed trivial compared to what Amy was dealing with,’ says Betsy. ‘But she listened closely and respectfully – Amy was a wonderful listener. And I admired her approach to running. It was central for her, yet she wasn’t obsessed by it.’

When she was in Eugene, Oregon, Amy ran with her brother Mark. He recalls running a half marathon there that coincided with a breakup with a girlfriend. ‘I was sad and out of energy and ran eight minutes slower than my goal time,’ he says. ‘I decided to go back on the same course a week later and try again. Amy volunteered to pace me for the first leg. She kept me on pace, but, more important, helped me laugh at myself and regain perspective. Thanks to Amy, I hit my time goal.’

Amy also ran to discharge the grief of losing her father. Dave Frohnmayer died in March 2015, from prostate cancer. ‘Amy ran more after her father died,’ says Alex. ‘She upped her mileage to process her grief and to get closer to her memories of Dave. She ran so hard she got shin splints and had to take a week off.’

In December 2014, Amy and Alex had gone on holiday to Kauai, Hawaii, with Dave and Lynn. It was a happy time for Amy. Each morning, she and Alex ran on the beach. The trade winds were gentle and the surf was warm for their postrun swims. A year later in Maui, Amy again relished the couple’s morning run along the beach. They ran two miles to a turnaround point in a grove of Kiawe trees, where Alex shed the engagement ring from his shorts pocket on bended knee.

From spring to autumn

Amy and Alex returned to Bend, and their busy, happy lives. They remained cautiously optimistic, simultaneously making plans and living day by day. In January 2016, Amy went in for blood tests and the results were good. Winter became spring – work, study, miles on the river trail – and Amy was nearing completion of her second master’s.

On May 6, a shard of pain shot through Amy’s spine while she was out running. She chalked it up to the residue of a recent viral infection. The pain quickly passed and she ran on. On a Saturday in mid-May, Amy and Alex went out for a seven-miler along riverside paths. The spring sunshine glinted off the water, Amy ran with her usual fluid grace, her fleeting pain forgotten. ‘Everything was working for us,’ says Alex. ‘We had so much to look forward to.’

Days later, however, Amy’s pain came flooding back. At the hospital doctors ran tests and sent her home, but the pain returned, magnified, deep and piercing. This time she was admitted to the hospital. Her blood counts, so encouraging just a few months before, had turned dire.

Amy was transferred to the OHSU Hospital’s 
Knight Cancer Institute in Portland, where
her diagnosis was confirmed. Acute myeloid
leukaemia (AML): for many FA patients, it’s the 
bitter prize for years of survival. Amy’s bone-
marrow cells had been almost entirely replaced with leukaemia cells; the prognosis could not have been darker. But the Frohnmayer team remained calm. They had been through this before. Indeed, Lynn had been preparing for this development for nearly 30 years.

The family rallied around Amy in Portland. Everything they’d been learning and practising for years now came into play. ‘We were optimistic,’ says Alex. ‘A lot of good minds were studying the possible cures and what-ifs.’

Amy had watched how her parents conducted themselves during the final illnesses of her two older sisters. She had been preparing for this moment for her entire life. ‘Amy knew just what to do,’ says Lynn. ‘You don’t give in to despair, you don’t let yourself spiral down. You take it step by step. She understood, with every fibre of her being, that no matter the situation, there’s always a next step.’

Beyond the pragmatic sphere, Amy responded with deep, intuitive wisdom. Instead of loosing a tide of fear, the sudden onset of AML released a surge of humour, compassion, insight and love that was remarkable even by Amy’s standards. ‘The course of her disease was typical of FA, but in every other way, Amy was the furthest thing from typical,’ says Bagby. ‘By every measure for a patient in her situation, or for a human being in general – cognition, communication, composure, peace of mind – Amy was the cream of the crop.’

‘In its own way, it was a spectacular summer,’ says Alex. ‘It was full of laughter. John, Amy’s uncle, her brother Mark and I all play guitar. In the hospital, we were always playing and singing with Amy. People walking by her room – nurses, visitors, other patients – would come in to sing with us. But it wasn’t the music. It was Amy. People just wanted to be around her.’

‘Amy’s mantra through the summer was gratefulness,’ Jonathan recalls. ‘She was constantly listing all the things she was grateful for, and asked all her visitors to do the same. On her way into surgery, she’d be asking the doctors and nurses what they were grateful for.’

On May 29, two days after her diagnosis at OHSU, Amy was flown to the University of Minnesota’s Blood and Marrow Transplant Clinic to undergo a cord-blood expansion. For the procedure to prove successful, the leukaemia cells would need to be ‘mopped up’ by new white blood cells. The results wouldn’t be clear until weeks later and with her immune system depleted, infection risk was high so Amy couldn’t leave the hospital.

On bad days she was weak, but on good days she laughed. There were so many visitors that Alex had to make a schedule. A treadmill was brought into her room for regular exercise. As soon as her blood counts improved, Amy would walk the hospital corridors, 11 laps for one mile. ‘The exercise was good for her physically, but it was also important to her to maintain a runner’s mentality and discipline,’ Alex explains. On her good days she would log her four miles, recording the total on a chart by her bed.

In early June, with bride and groom wearing surgical scrubs, Amy Frohnmayer and Alex Winn were married in her hospital room. Ten days later, via Skype, Amy participated in the degree-granting ceremony for her master’s and she was honoured as her cohort’s most distinguished student.

Six weeks after the cord-blood expansion, tests revealed that the leukaemia cells had returned. Amy was flown back to Portland and readmitted to OHSU’s Knight Cancer Institute.

‘We never gave up,’ says Alex. ‘We tried to balance the experimental treatments with what they took out of her and her quality of life.’ Dr Brian Druker, whose pioneering research resulted in the breakthrough cancer drug Gleevec, pored over Amy’s charts and lab results, helping to brainstorm any conceivable treatment. Bagby contacted his international contacts to ask about potential clinical trials. ‘It was always Plan A, then Plan B, then Plan C,’ says Alex.

‘I was heartbroken,’ says Chenxing. ‘Her leukaemia came so hard and so suddenly. But in the hospital, amazingly, it was the same old Amy. She wouldn’t deny what was happening, but she still refused to let it define her. Every day in her room felt like a party, full of visitors, music and love.’

Summer edged into autumn, Amy’s favourite season. ‘Fall is heartbreakingly beautiful,’ she wrote in a 2014 letter to FARF donors. ‘Each crisp, clear morning brings opportunities to fall in love with the world anew. Colour-soaked trees line the river path on morning runs... Fall is also the honest season. It does not pretend that life blooms forever. This season reminds me that life and death are intrinsically intertwined, that cold and rain are just as crucial in sustaining balance as sun and warmth. Fall reminds me to see the fact of impermanence not as a fear-inducing harbinger of death, but rather as a useful tool in crafting a meaningful, beautiful life.

‘FA has wrinkled my story with loss, including the deaths of my two sisters, Katie and Kirsten, and has challenged me repeatedly with the threat of an abbreviated life expectancy. This illness has instilled in me the importance of living in accordance with the themes I cherish most: appreciation of beauty in nature, gratitude, love, generosity and being profoundly present for the life that is here.’

As September waned, Amy grew progressively weaker, but her glow persisted. Mark recorded a video of Amy in her hospital room. ‘I love running,’ she said in it. ‘I like to always stay at a place where I could run a half marathon if I really had to.’

‘You never know when you’re going to have to run half of 26 miles to tell the Athenians what’s up,’ Mark said, joking. Amy laughed and then cried, and then started laughing again. The video ends with her reciting lines from the poem In Blackwater Woods, by Mary Oliver: ‘To live in this world/you must be able/to do three things:/to love what is mortal;/to hold it/against your bones knowing/your own life depends on it;/and, when the time comes to let it/go,/to let it go.’

On the afternoon of October 1, Amy looked up from her bed in the intensive care unit and smiled at Lynn. She had been transferred there that morning, as a result of pneumonia. ‘How lucky am I? Every time someone comes into my room, it’s someone I love!’ she said.

Late that night she struggled to breathe. Nothing more could be done. Just before dawn on October 2, 2016, surrounded by her family, Amy Frohnmayer Winn died. She was 29.

Lasting legacy

Due to work funded and catalysed by FARF, young people with FA now survive bone-marrow transplant on an almost routine basis. People with FA are now growing up, starting careers and falling in love. ‘Last year, for the first time, the number of adult patients in our FA support group outnumbered the children and adolescents,’ says Lynn. ‘Since the foundation started, the overall life expectancy for FA has increased at least 10 years.’

Try as she might to say that she has only done what any parent would do, and that the foundation’s achievements are the product of a team effort, Lynn Frohnmayer’s greatness shines through. Every day for 33 years, through the exuberant lives, wasting illnesses and premature deaths of three daughters Lynn displayed extraordinary grace under unimaginable pressure. She endured immense suffering, and displayed immense resistance to that suffering.

‘The challenges facing that family were overwhelming,’ says Bagby. ‘The way they responded to those challenges has helped people around the world. Thanks to Lynn’s work, we now understand the basic science of Fanconi anaemia.’

In the annals of distance running, of people struggling with cancer and other fatal diseases, and of distance runners engaged with those maladies, the case of Amy Frohnmayer Winn would probably rank well down the all-time lists. She never set a record, never won a race and never made a grand heroic gesture in the manner of Terry Fox, who in 1980, while dying from cancer, ran more than halfway across Canada on a prosthetic leg to raise money for cancer research.

Rather than the ultra marathon or transcontinental consciousness-raising and fundraising trek, Amy’s metier was the humble daily run. She raced but didn’t worry where she finished, and many of her best runs were logged solo. But Amy ran no less passionately than Terry Fox and her contribution, as an inspiration, is just as significant.

No matter how long we run, there inevitably comes a moment of doubt that all the time out on the road or on the track is meaningless, a reassuring fiction we tell ourselves, just another one of the infinite ways that we human beings have concocted to deny the fact of our mortality.
 The moment passes and out of habit and denial we keep running.

But that nagging doubt will return, and when it does it can be faced down by recalling the Promethean example of a Terry Fox or some other titan. Or our footsteps can be settled by recalling a young woman who placed running near the centre of her life but never grew obsessed by it; who nonetheless covered each mile, each step, as if it were her last. We can remember Amy Frohnmayer Winn, who never enjoyed – or never was blinded by – the luxury of denying her death; who knew from the earliest possible age that she possessed an unfairly limited stock of moments on this planet.

Amy decided to live inside her moments. Amy chose to run.